Brain washed

I think I need to disclaimer this one before we begin. My brain is shot, you’ll find out why shortly. Typos are inevitable. Enjoy.

Since July, I have had two cycles of spinal radiotherapy. There were tumours and deposits nestling among my spine, their metastasising tentacles playing havoc with my nerves and really causing an awful lot of discomfort. The radiotherapy helps. It removes the pain, and my life has continued with only the minor drama of figuring out how to continue it.

So success, I would say, radiotherapy has been successful. Certainly for quality of life, despite the rampant fatigue follows. It is a tiredness so numbing that I forget the cause of it. Usually, I end up curled up on the floor in a tight little ball sobbing “why am I so tired?” And Hodgkin’s lymphoma is rather susceptible to radiotherapy, so I am fortunate that I only require five days of zapping at a time, at a rather low ‘dose’. Others must suffer far worse than I.  But despite my low radiotherapy dose, the spine itself has a limit as to how much radiation it can receive. After my September zapping I was reaching that threshold. If, or when, the spinal masses return I’ll need to increase my pain tolerance, because I won’t have the luxury of further spinal radiotherapy.

This means I have been having a little trouble trying to ascertain which symptoms I ought to be reporting, and which are just little niggles that become over-hyped in my obsessive anatomical monitoring. I mean nobody wants to hear about my bowels. Although, as a side note, the hospice has quite a helpful pamphlet on the issue, with tips on toilet posture and breathing. Anyway, despite over-monitoring, the biggest issue I have is admitting the symptoms to myself. A little bit of courage is required to mention that this stiff neck that I have had for four weeks or so, has now morphed into a two week headache. And the headache is starting to wear me down a bit. Maybe, maybe I should have reported that. It wasn’t until my tongue refused to obey my commands when chewing or speaking that I thought some symptoms may have gone a little far.

The hypoglossal nerve is a cranial nerve which runs from the brainstem, through a canal, before linking back into the spinal cord. It only deals with motor-function. If the nerve suffers pressure, from say a lymph node, the tongue tends to stray to the affected side. Right now, if I were to poke my tongue at you, it would skew to the right like a cartoon puppy. If I were to read to you, I would have the slur of a cartoon cat. Rather comical really. If it were caused merely by a lymph node and if the bloody pain would go away.  

A hospice nurse calls me once a week, just to check in and what have you. I am still acclimatising myself to the hospice system. Most of the time I am too healthy to require any services, except perhaps emotional ones. And I am quite young within the Nelson community as a whole (Hospice aside) so am not really sure where I fit in. But they call, and they are always there, and that is possibly all I really need. For some reason, the day the nurse called, I was sore and restless and maybe feeling a little bit brave, so I mentioned this neck pain and unruly tongue. It turns out that puppy dog tongues aren’t so cute, and Looney Tunes has fallen out of fashion since we all grew up and realised the entire show was casual racism. Or just flat out racism. Even in this post-Trump world, my new facial expressions and lingo just would not do.

It is odd how things then escalate. I wouldn’t say that it was panic, it was more rush. I have fortnightly immunotherapy trips to Wellington. Every second Tuesday. This call was on like a Thursday. I had been sitting on these symptoms for a couple of weeks. It made perfect sense to me just to wait until Tuesday. But no. Whizzed up to Wellington A&E on a Saturday, admitted into the ward to wait for a MRI scan. Although I was pretty jolly healthy, all things considered, I needed to be an inpatient to get the scan quickly. Otherwise I would be waiting weeks. It seems an odd system. We found ourselves in one of those teeth-clenching, tweeked out situations. Rush, rush. Wait, wait, wait. Earthquake. Rush. Wait. Scan, wait. Results, rush. Wait. I am sure you get the picture. I am simply terrible under those circumstances. The air turns dense, forcing itself upon my shoulders, my arms, and my legs. I was a wreck. It wasn’t the fear of the scan, or the results, or the implications, it was merely the unknown. The rushing, and sitting, and rushing and for what? I found myself in a space where I was desperately trying to pass time. Yet time is meant to be so precious to me. I guess I lost the ability to enjoy the time I had available. That can be dangerous.

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, swaying with the frequent aftershocks. This is kinda how it went down for me. So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into the brainstem. Shit. The upside, my symptoms replicated what they were seeing on the scan and targeted radiotherapy would, at the very least, stop progression. Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe. Huh. So the options you have are to target the sight causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please? My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice.

I won’t draw it out any longer. The decision switched three or four times as the differing medical teams decided which option was best. It was ten minutes before my planned radiotherapy session when Mike and I found out how much brain was going to be zapped. Whole brain radiotherapy was the answer. It would be too difficult to match symptoms if the lymphoma breached the brain membrane in the future. Best to get rid of all the cells now, you’ll get to enjoy the rest of your life with a numb brain, but hey, at least you’ll keep your vision. And it will lower the chance of a stroke. And the numerous other benefits of keeping Hodgkin’s lymphoma out of the frontal lobe. Really, it is a no-brainer. Groan away.

So now I have had my brain zapped, five times, which is nothing on what the poor bastards with brain tumours have to go through. A few guys I have met were doing it for six weeks. I am in awe. I honestly feel like my brain has been pureed. My thought processes are so slow that it feels like the world is on fast forward. Most of the time it is amusing, like a trip or something, and I watch the world spaced out, boggled by the smallest of incidents. But then I am required to do something tricky, like say words that make sense, and I freak out a bit. All of the brain guys are going through worse than me, far worse, I salute you. You’re getting me through my self-absorbed fatigue phase.

Losing my hair again, just in time for summer

I ought to write about the actual radiotherapy sessions. It is different, having it done to the head, rather than to spine and the abdomen. They mould a mesh mask to you, for one thing, then the mask is clamped to the bed. I panicked a little when the mask was being made. I was worried I wouldn’t be able to breathe so I kept my mouth ajar at an odd angle. The mask is mesh, as I said, so air supply was not at all a problem. Keeping my mouth at an odd angle for twenty minutes each session was more of an issue. Your eyes must remain closed throughout the session, and there was a vague smell, like faint gas mixed with an overheating appliance. Anyway, to the head is different, and more frightening, and kids do it.

This is where this post turns selfish. The biggest difference is the fatigue. I am going to try and explain it here, in the hope that I will stop going on about it in the real world. Because it seems to be all I talk about, it is all I think about, and those dealing with me on a day to day basis must be pretty bloody sick of it. I have become so self-involved that it hurts. I know gradually over this entire illness I have been sinking into selfishness. But right now it is pretty close to consuming me. This fatigue is unlike anything I have ever experienced. It isn’t ‘oh take nap’ fatigue. The nap won’t help. It is like I am in a constant state of inebriation. Without being jolly. Well, sometimes I am jolly. All those little tiny choices you make, daily, without even knowing you’re making them, I now actually have to think about them. Like really fucking think. I have never been very decisive anyway, so deciding whether to wear pyjama trousers or track pants is excruciating. Because the answer is probably wear shorts. And then I freak out.

That scenario, which is not exaggerated, only relates to me internally. Now let’s try inserting these flawed thought processes into social situations. Or having to make a decision for someone else. Fuck me. I have just returned from a pretty spectacular fail in regards to a catch-up lunch. I can’t, like, pick a table or a café or even really cross the road, and I can’t remember time at all, so I can’t remember when I last saw someone or whether it was last week that I had radiotherapy (it was because I’ve just looked it up) or even figure out that in three months massive things that don’t involve me having fucking radiotherapy could have existed in somebody else’s life. I haven’t figured out how to tell people that what was cognitively normal last week is now impossible. Not a slow demise. A giant collapse. I need a TFL badge or something. So I guess this is the selfish bit, where I openly apologise to everyone and say I am trying, but I don’t know the best route home, and I can’t choose a flavour of potato chip.

I am unsure if I have conveyed how smooshed I feel. This post is poorly written. I know it is. I know the grammar is poor and the tense changes are difficult to read. I know I have used many words incorrectly. I have tried to write clearly, but I know it is not of good quality. And I cannot fix it, which is very difficult for me to accept. But that is where my brain is at. The next post will be more fun. I promise. I mean, I am pretty sure I have smashed the world record time for eating a packet of Tim Tam Classics. There could be a time challenge brewing.        

  
10 December 2016

So because I cannot remember a bloody thing, I had to re-read this post to prevent severe repetition in future posts. I can’t promise there won’t be repetition, but it I can say that I have done all I can to minimise it. Anyway, as I was reading away, I had to stop myself from proofreading this entry. I realised that if I corrected the errors, the purpose of the post would be lost. But there is a paragraph that doesn’t make much sense, so I have tidied it up:

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, which was swaying with the frequent aftershocks. This is kinda how it went down for me: "So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into your brainstem." Shit. "The upside, your symptoms replicate what we are seeing on the scan and targeted radiotherapy will, at the very least, stop further progression." Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. "Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe." Huh. "So the options you have are to target the site causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please?" My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice. 

Oh, the places you'll go

The other day, on a taxi ride from Wellington hospital the driver announced to us that he knew a miracle cure. It would cure anything. A doctor had told him so. It is at this point that I begin to shuffle awkwardly in the backseat, grit my teeth, mentally preparing my politest “mmm’s”, “ahh’s” and other uncontentious sounds. Mike, also, dropped his eyes and began fidgeting. Chocolate and laughter were the driver’s super-secret pick-me-up. He even gave me a fistful of chocolate to prove his point. And that’s fine. It is nice, even. But I was pretty concerned he was going to start touting hydrogen peroxide or turmeric lattes. A gluten free diet and magnesium at night. People do, you see. It is probably all in good faith, but that doesn’t make it any less frustrating. Because my magnesium is measured weekly and immunotherapy requires an inflammatory response so turmeric ain’t gonna help. No, no, your gluten free, dairy free, refined sugar free organic air diet isn’t going to cure my cancer. Oh and hydrogen peroxide? The so-called miracle cure. Gives your body an extra oxygen molecule, you say? Well, I could explain the complex biological process called breathing to you or, or, I could whop you round the head for exploiting vulnerable people with what is essentially a pyramid scheme. And I whop good. I’ll use every damn gram/L of my 104 Hb to lay the smack down. Somebody generously offered me God. He has a sense of humour, I’ve been told. I am not sure that Syria would agree. And what did I just say about exploiting vulnerable people? Something that does make me feel better is coffee. No turmeric. Strong coffee. It’s required to get through the day. Actually, I’ll put a pot on now. See if I can’t up this writing game a bit. Chocolate and laughter do help too. And cheese. And beer. The taxi driver didn’t do too bad really.

   

Emily McDowell, who’s had cancer, has designed a bunch of cards. One says “I am so sorry you’re sick. I want you to know that I will never try to sell you on some random treatment I read about on the internet.” The fact that this card exists, has a need to exist, sucks. I would like to see a bucket list card. Something like ‘No, I’m not just ticking you off a list.’ At this point in my life it is dangerous to have lists. This is the time where I can ‘live the moment’. A list would be restricting, and a little insulting. I am never going to be happy about tagging out early. No number of ticks are going to make that ok. That is not to say I haven’t been doing things. I have, just not in any particular order, or for any particular reason other than an impulsive urge. I know I said earlier that I could only find positive end-of-life blogs, and that this one wouldn’t become one of those. Well, it probably won’t, but I have learned that the reason they’re possibly all so fucking positive is because on the down days the individuals are too tired to write. Or if they do, the words are not concise enough to make their blog. I have entries I wrote when I was rapidly losing my mind and, funnily enough, they make little sense.

So I know I just announced my disapproval of diets, lists, and positive terminal blogs, but I have cancer so my memory is a little dodgy. Some may term it “hypocritical”, but hey, let’s not use labels here. I remain, and will continue to remain, a vegetarian. And sometimes, when one reads that something is a possibility, like standing on the rim of an erupting volcano, one just can’t help but think ‘fuck, I need to do that’. I never knew that was something I wanted to do. Neither did Mike. Neither did my sisters. But there we were, sometime in August, trying to start a crazy volcano cult in Vanuatu. Unfortunately, the cult didn’t take. I think we would have had more success had my hair been longer. Hair length is directly proportional to cult uptake rate, right?

My medical team don’t need to know about the volcano incident. That’ll remain our little secret, if that is ok. They know I am travelling, it is just that sometimes communication issues arise. They’ve heard ‘boutique resort’, when what I really meant was an off-the grid one room hut made from bamboo branches and banana leaves. It’s merely a matter of interpretation. They thought I meant Cairns, when actually I meant a boat an hour or so off the coast of Cairns. You know, on that big ass reef. Oh, you thought I was going to be looking at the reef through a glass bottom boat? Crap, no I meant through a snorkel mask. Man, I really need to work on my communication skills. So many misunderstandings. Whoops. Hindsight, eh?

There are practical issues that need to be considered when traveling whilst terminal. Again, these do not appear on any blogs. The issues range from the obvious: flight time, hospital proximity, fatigue management; to the less obvious: transfusion facilities, border medication policies, transportation quality. With my prednisone biceps and thighs, I cannot stand on the back of a four wheel drive ute. Just little things one needs to consider. Insurance. Insurance is another issue. I know in the UK there are companies that will insure cancer patients. I have heard that there is one in NZ. I don’t think any will insure a terminally ill patient. Some won’t go near me. You can almost hear the website laughing at you. I tend to travel without insurance. Like, I have it for my bags and stuff, but medically, no not really. Southern Cross have a box you can tick that says you have a condition that you don’t want insurance for. It means that, technically, if I were to break a leg, I would be covered because it is unrelated to my condition. However, I imagine they would find an out there. I imagine that everything would somehow be related to my condition. We use Southern Cross anyway, despite knowing we’re probably going to get screwed if anything should happen. 

On our first trip I searched for travel advice. All I could find was information on flying with oxygen tanks. OK, so I’m not that sick. And that was something that surprised me. On a flight to Apia, when to be honest I wasn’t the healthiest, I glanced around the plane and realised I wasn’t the sickest on-board. Sure, I probably have the shortest life expectancy, but I don’t need a wheel chair or special assistance. Not yet anyway. I’ve found that secrecy works best. You never know when Jetstar will decide you’re too ill to travel. I think of it like I’m a kick-ass superhero. Ok, well yeah so my powers are a little faulty, but my identity still needs to remain hidden. Sometimes, duh dah dah, I am unmasked, usually at communal dinner table with that kryptonite question: “so what do you do?” Quick guys, what do I do? I haven’t come up with a decent response yet. “Finding myself” sounds wanky, “retired” sounds sarcastic, and “well, actually I am terminally ill” really kills the conversation. It is a tricky yet frequent question. I am fortunate, in a way, that nobody from my past tends to recognise me with the short hair and all. But I have always been slightly awkward, so when somebody strikes up a conversation with me, in the supermarket say, and they think they’re talking to a stranger, yet I’ve known them most of my life… well it’s a dilemma. Because if I own up the first question they’ll ask is “what are you up to?” And let’s be honest; I’m up to fuck all. A common bum reliant on opiates, caffeine and bloody Mary’s to make it through the week.

I'm all at sea!

If I have pissed off any terminal patients because they feel miserable while I look like I am on top of the world, don’t worry, I’ve also felt like shit. It’s just that none of those entries make any sense, and often the hard times soften in memories. Think of the all things you no longer need to worry about. Saving for a house. Next summer’s fashion. Flossing. These are aspects of life that just no longer matter. You can raise a middle finger to your phone when it reminds you, for the tenth time, that you’re listening to music far too loudly and it may cause hearing loss. Ha! Not really an issue. Try bugging someone else little phone.

Gosh, so this post has gone nowhere. I guess the main purpose was to let you know that I am still alive. I’ve spent a good portion of the last six weeks in locations without cell phone or internet coverage. There’s been a bit of swimming. My Hickman line is gone, you see, so I can snorkel with turtles and sharks and nemos. Again, something I never thought I wanted to do, until I nearly couldn’t do it. That’s the point. A list implies that things need to be done. I prefer to think in terms of things that can be done. Opportunities, not obligations. A list has an end and I don’t want an end.

11th July 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little depressing. I was aiming to get them all up within a week. Best intentions, eh?

When I wrote this I was still in Wellington hospital and on a high morphine dose. Again, this post is cheesy. But I do not apologise this time.

11^th July 2016

I have been struck with a sudden, maybe even overwhelming, desire not to die. Overwhelming is probably a bit much. I am not hysterical. I am not even sobbing. I am merely weeping from one eye. I don’t know what weeping from one eye is called. Sadness, perhaps?

I don’t have a bucket list. A few people, including medical professionals, have asked me about my list. Even to compose a list. My bucket list was to live a long life with Michael. Before all this, the disease, the relapses, I’d become comfortable with myself. And I’d come to quite like us as a couple. We were growing up, maturing, and our life in Nelson was going to help people, both now people and future people. I have no doubt that Mike will continue to do good once I am gone. He is the best man I know. But I am really quite sad that I will not be there to watch him achieve this greatness. His wife is going to die, and I’m not going to be there to help him when that happens. That is the hardest part for me. I love that man so much. I am going to miss him even though I won’t actually be around to experience the loss.

I am lucky, so lucky, to feel this strongly about someone. But I am sad, and both eyes are weeping now.